Ideas on staying organized?

spotthedot Member Posts: 5
Hi, my name is Amanda and I was diagnosed with Stage 4 Hodgkin’s Lymphoma five years ago. Thankfully, I am now doing very well!

I am currently a graduate design student at Pratt Institute in Manhattan. For my thesis project I would like to create a welcome binder for new cancer patients. Inside would be information about what to expect while receiving treatment, charts and forms to help patients stay informed, organized and keep track of appointments.

I would really appreciate it if you could answer some questions to help develop this binder thoroughly. You can answer as many or as few questions as you have time for. Any information will be extremely beneficial. Thank you for all your help!

1. What do you do to stay organized?

2. Have you ever been confused by appointment times, treatment schedules, etc.? What could be done to reduce this confusion?

3. Do you sometimes forget key information? (like special diets, daily routines, etc.)

4. What do you do with all the blood work and test results, or papers your doctor may give you?

5. How many caregivers are involved in the treatment processes? How does everyone stay informed and updated?

6. What’s the most important advice you would give to a new patient?

Any additional comments are also welcomed!

Thanks again!


  • Chris17
    Chris17 Member Posts: 175
    staying organized
    Hi Amanda, the best thing that worked for me was i carried a journal with me i wrote down everything, doc appts , chemo appts, diets etc.All the results i kept in a large manilla envelope(of which i had quite a few), my advice to a new patient is to write down questions to ask your doctor, and if there is anything you dont understand ask the doc to explain it to you, in plain simple terms as we know docs will forget we wont understand the medical jargon, and after the explanation is given and you still dont understand let the doc know, just leaving your appt with more questions wont help you. They are there to help us and and you have the right to know and understand what is going on with your body and illnesses. Dont think you are being a pain by asking questions, i did thru my whole treatment, i wanted to know the what fors, the whys and the what ifs, i was very outspoken as time went on thru my chemo, thats one thing i never was before,my chemo brain i have now is still making me a bit nuts but im glad i got into the routine of writing things down, glad to know you are doing well, good luck to you!
    Chris(FNHL-stage3-04/08) in remission
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    My name is John and I was diagnosed in May 2010 with nhl stage 4 and am currently in remission myself. I keep all my records in a manilla folder. I ask for copies at the Drs. office everytime a test is done. All my appts. are on the calendar. I do forget a lot of things An example would be I can open a soda and go back a few minutes later and open another. Forgot I opened the other one. Its getting better. The most important advice I can give anyone newly diagnosed is to stay off the Lymphome websites. Most info is way outdated and can be confusing as heck.
    Where were your tumors located if you don't mind me asking. Just trying to make a comparison to my own diagnosis. I know we are all different,but it is always nice to be able to compare with other people. John (FNHL-1-4A-5/10) (REMISSION)
  • allmost60
    allmost60 Member Posts: 3,178
    Ideas on staying organized.
    Hi Amanda,
    My name is Sue, age 60, diagnosed with Follicular Non-Hodgkins Lymphoma stage 3 grade 2 type A(indolent) in June 2010. On my first visit to meet with my Oncologist I was given a Medical organizer by the American Cancer Society. Then I was given a large notebook from my Cancer Clinic which contained tons of information on my cancer,blank question forms to give to my doctor, small note cards to keep track of appointments, etc,etc. This has been a huge help for me to stay organized and top of things. I have a network of care givers...hubby, sons, extended family and numerous good friends. I keep them informed on my medical progress and I also always have someone with me at doctor appointments and treatment days. The main advice I would give to new cancer patients is to always get copies of their labs work,tests/scans/US/etc.Have the clinics doing the tests send the results to you at home, not just to the doctor. This way you don't have to wait weeks on end to find out the results because your doctor can't see you any sooner. It sure saves on the mind running wild with wonder and worry. The second bit of advice I would give is to join a support group like CSN. It's like having a second family.Glad to help you Amanda.
    Have a good day..Sue